Indian Journal of Palliative Care
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   2014| September-December  | Volume 20 | Issue 3  
    Online since August 8, 2014

 
 
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POSITION PAPER
End of life care policy for the dying: Consensus position statement of indian association of palliative care
Stanley C Macaden, Naveen Salins, Maryann Muckaden, Priyadarshini Kulkarni, Anjum Joad, Vivek Nirabhawane, Srinagesh Simha
September-December 2014, 20(3):171-181
DOI:10.4103/0973-1075.138384  PMID:25191002
Purpose: To develop an End of Life Care (EOLC) Policy for patients who are dying with an advanced life limiting illness. To improve the quality of care of the dying by limiting unnecessary therapeutic medical interventions, providing access to trained palliative care providers, ensuring availability of essential medications for pain and symptom control and improving awareness of EOLC issues through education initiatives. Evidence: A review of Country reports, observational studies and key surveys demonstrates that EOLC in India is delivered ineffectively, with a majority of the Indian population dying with no access to palliative care at end of life and essential medications for pain and symptom control. Limited awareness of EOLC among public and health care providers, lack of EOLC education, absent EOLC policy and ambiguous legal standpoint are some of the major barriers in effective EOLC delivery. Recommendations: Access to receive good palliative and EOLC is a human right. All patients are entitled to a dignified death.
  • Government of India (GOI) to take urgent steps towards a legislation supporting good EOLC, and all hospitals and health care institutions to have a working EOLC policy
  • Providing a comprehensive care process that minimizes physical and non physical symptoms in the end of life phase and ensuring access to essential medications for pain and symptom control
  • Palliative care and EOLC to be part of all hospital and community/home based programs
  • Standards of palliative and EOLC as established by appropriate authorities and Indian Association of Palliative Care (IAPC) met and standards accredited and monitored by national and international accreditation bodies
  • All health care providers with direct patient contact are urged to undergo EOLC certification, and EOLC training should be incorporated into the curriculum of health care education.
  7,922 405 -
ORIGINAL ARTICLES
The perception of trauma patients from social support in adjustment to lower-limb amputation: A qualitative study
Sousan Valizadeh, Behrouz Dadkhah, Eissa Mohammadi, Hadi Hassankhani
September-December 2014, 20(3):229-238
DOI:10.4103/0973-1075.138401  PMID:25191013
Introduction: The effect of amputation on an individual's psychological condition as well as family and social relationships is undeniable because physical disability not just affects the psycho-social adjustment, but also the mental health. When compared to normal people, such people are mostly experiencing social isolation. On the other hand, social support is known as the most powerful force to cope with stressful situations and it allows patients to withstand problems. The present study aims to explain understanding the trauma of patients and the experience of support sources during the process of adaptation to a lower limb amputation. Materials and Methods: The present study was conducted using qualitative content analysis. Participants included 20 patients with lower limb amputation due to trauma. Sampling was purposive initially and continued until data saturation. Unstructured interviews were used as the main method of data collection. Collected data were analyzed using qualitative content analysis and constant comparison methods. Results: The main theme extracted from the data was support sources. The classes include "supportive family", "gaining friends' support", "gaining morale from peers", and "assurance and satisfaction with the workplace." Conclusion: Given the high number of physical, mental and social problems in trauma patients, identifying and strengthening support sources can be effective in their adaptation with the disease and improvement of the quality of their life.
  5,445 168 -
Safety and efficacy of oral transmucosal fentanyl citrate compared to morphine sulphate immediate release tablet in management of breakthrough cancer pain
Sushma Bhatnagar, Saraswathi Devi, NK Vinod, PN Jain, G Durgaprasad, Sanjaykumar H Maroo, Ketan R Patel
September-December 2014, 20(3):182-187
DOI:10.4103/0973-1075.138386  PMID:25191003
Aim: To compare the efficacy and safety of oral transmucosal fentanyl citrate (OTFC) and oral morphine in Indian patients with breakthrough episodes of cancer pain. Materials and Methods: In this randomized, open label, active controlled, clinical study, total 186 patients who regularly experienced 1-4 episodes of breakthrough cancer pain (BTCP) daily, over the persistent pain controlled by taking oral morphine 60 mg/day or its equivalent were randomized to receive either OTFC 200 mcg or oral morphine 10 mg for the treatment of BTCP for 3 days. Improvement in pain as determined by numerical rating scale (NRS) at 5, 15, 30, and 60 minutes of drug administration and percentage of BTCP episodes showing reduction in pain intensity by >33% at 15 minutes were primary efficacy endpoints. Secondary efficacy endpoints were requirement for rescue analgesia and global assessment by physician and patient. Data of both treatment groups were analysed by appropriate statistical test using software, STATISTICA, version 11. Results: Patients treated with OTFC experienced significantly greater improvement in pain intensity of breakthrough episodes compared to those treated with oral morphine at all assessment time points ( P < 0.0001). 56% of breakthrough pain episodes treated with OTFC showed a greater than 33% reduction in pain intensity from baseline at 15 minutes compared to 39% episodes treated with oral morphine ( P < 0.0001). Patient's and physician's global assessment favoured OTFC than oral morphine ( P < 0.0001). Requirement of rescue analgesia in both the study groups was similar ( P > 0.05). Both study drugs were well tolerated. Conclusions: OTFC was found to provide faster onset of analgesic effect than immediate release oral morphine in management of breakthrough cancer pain.
  4,650 214 -
The relationship between ethnicity and the pain experience of cancer patients: A systematic review
Wingfai Kwok, Thakshyanee Bhuvanakrishna
September-December 2014, 20(3):194-200
DOI:10.4103/0973-1075.138391  PMID:25191006
Background: Cancer pain is a complex multidimensional construct. Physicians use a patient-centered approach for its effective management, placing a great emphasis on patient self-reported ratings of pain. In the literature, studies have shown that a patient's ethnicity may influence the experience of pain as there are variations in pain outcomes among different ethnic groups. At present, little is known regarding the effect of ethnicity on the pain experience of cancer patients; currently, there are no systematic reviews examining this relationship. Materials and Methods: A systematic search of the literature in October 2013 using the keywords in Group 1 together with Group 2 and Group 3 was conducted in five online databases (1) Medline (1946-2013), (2) Embase (1980-2012), (3) The Cochrane Library, (4) Pubmed, and (5) Psycinfo (1806-2013). The search returned 684 studies. Following screening by inclusion and exclusion criteria, the full text was retrieved for quality assessment. In total, 11 studies were identified for this review. The keywords used for the search were as follows: Group 1-Cancer; Group 2- Pain, Pain measurement, Analgesic, Analgesia; Group 3- Ethnicity, Ethnic Groups, Minority Groups, Migrant, Culture, Cultural background, Ethnic Background. Results: Two main themes were identified from the included quantitative and qualitative studies, and ethnic differences were found in: (1) The management of cancer pain and (2) The pain experience. Six studies showed that ethnic groups face barriers to pain treatment and one study did not. Three studies showed ethnic differences in symptom severity and one study showed no difference. Interestingly, two qualitative studies highlighted cultural differences in the perception of cancer pain as Asian patients tended to normalize pain compared to Western patients who engage in active health-seeking behavior. Conclusion: There is an evidence to suggest that the cancer pain experience is different between ethnicities. Minority patients face potential barriers for effective pain management due to problems with communication and poor pain assessment. Cultural perceptions of cancer may influence individual conceptualization of pain and affect health-seeking behavior.
  4,378 135 -
Creation of minimum standard tool for palliative care in India and self-evaluation of palliative care programs using it
MR Rajagopal, Anjum Khan Joad, Maryann Muckaden, Reena George, Harmala Gupta, Mhoira EF Leng, Gayatri Palat, Firuza Patel, Biju Raghavan, Suresh K Reddy, MM Sunilkumar, Mallika Tiruvadanan, Stephen R Connor
September-December 2014, 20(3):201-207
DOI:10.4103/0973-1075.138395  PMID:25191007
Background: It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved. Aims: (1) Creation of minimum National Standards for Palliative Care for India. (2) Development of a tool for self-evaluation of palliative care organizations. (3) Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country. Materials and Methods: The working group prepared a "standards" document, which had two parts - the first composed of eight "essential" components and the second, 22 "desirable" components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale. Results: Forty-nine (57%) palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards. Conclusions: We demonstrated that the "standards tool" could be applied effectively in practice for self-evaluation of quality of palliative care services.
  3,758 182 -
Symptom burden and quality of life in advanced head and neck cancer patients: AIIMS study of 100 patients
Ajeet Kumar Gandhi, Soumyajit Roy, Alok Thakar, Atul Sharma, Bidhu Kalyan Mohanti
September-December 2014, 20(3):189-193
DOI:10.4103/0973-1075.138389  PMID:25191005
Aim: Head and neck cancers (HNCa) are the most common cancers among males in India and 70-80% present in advanced stage. The study aims to assess symptom burden and quality of life (QOL) in advanced incurable HNCa patients at presentation. Materials and Methods: One hundred patients were asked to fill EORTC QLQ-C15-PAL questionnaire, which consisted of Global QOL, physical functioning (PF), emotional functioning (EF), fatigue (FA), nausea-vomiting (NV), pain (PA), dyspnea (DY), sleep (SL), appetite (AP), and constipation (CO). Additional questions pertaining to swallowing (SW), hoarseness (HO), cough (CG), weight loss (WL), using pain killers (PK), taste (TA), bleeding (BL), hearing (HE), pain in neck lump (PALMP), opening mouth (OM), and oral secretions (OS) were asked based on a modified EORTC-HN35 questionnaire. Scoring was according to EORTC scoring manual. Mean, median and range were calculated for each item for the entire cohort. Results: The female:male ratio was 17:83.42% of them were ≥60 years of age. Sixty-six patients had T4, 25 had T3, 36 had N2, and 33 had N3 disease. Median QOL was 50 (range 0-83.33) and PF was 77.78 (0-100). Median score for EF and FA was 50. Median score for PA, PK, and SL was 66.67 while that for AP was 33.33. Median value for SW, HO, WL, BL, PALMP, OM, and OS was 33.33 (100-0) while TA, CG, NV, DY, and HE had a median score of 0.00. Conclusion: Advanced HNCa has a significant burden of symptoms. These results would help in giving patients better symptom directed therapies and improve their QOL.
  3,608 203 -
Supportive care needs of Iranian cancer patients
Azad Rahmani, Caleb Ferguson, Faranak Jabarzadeh, Asghar Mohammadpoorasl, Narges Moradi, Vahid Pakpour
September-December 2014, 20(3):224-228
DOI:10.4103/0973-1075.138400  PMID:25191012
Background: A supportive needs assessment is an essential component of any care program. There is no research evidence regarding the supportive care needs of cancer patients in Iran or other Middle Eastern countries. Aims: The aim of this study was to determine the supportive care needs of Iranian cancer patients. Materials and Methods: This descriptive study was conducted in a referral medical center in the northwest of Iran. A total of 274 cancer patients completed the Supportive Care Needs Survey (SCNS-59). Descriptive statistics were used for data analysis. Results: In 18 items of the SCNS, more than 50% of the participants reported that their needs were unmet. Most frequently, unmet needs were related to the health system, information, physical, and daily living domains, and most met needs were related to sexuality, patient care, and support domains. Conclusions: Iranian cancer patients experience many unmet needs and there is an urgent need for establishing additional supportive care services in Iran.
  3,357 161 -
CASE REPORT
Metastatic primary duodenal adeno-carcinoma responding to metronomic oral cyclophosphamide chemotherapy
Anis Bandyopadhyay, Mou Das, Subhra Kanti Kundu
September-December 2014, 20(3):239-242
DOI:10.4103/0973-1075.138402  PMID:25191014
Primary adenocarcinoma of duodenum is a very rare tumour with a prevalence of only 0.3 to 1% of among all the tumours of gastrointestinal tracts. Localised tumours, if resected have good prognosis but those with metastates entails a poor prognosis, where generally palliation may be the only feasible option. Low dose continous cytotoxic treatment or metronomic chemotherapy prevents neoangiogenesis and chemoresistance thereby, provides excellent symptom relief and palliation in many advanced heavily pretreated solid malignancies. It offers as an affordable, less toxic therapy with moderate to good efficacy. Here we report a case of a 52 year female who, presented with history of maleana, pallor and pedal edema for last 2 months. Her performance status was poor (KPS 40) and she had enlarged left supraclavicular lymph node, palpable liver and vague mass in paraumbilical region. Upper GI endoscopy revealed large ulceroproliferative growth in the D2 segment and HPE showed moderately differentiated adenocarcinoma. CT scan revealed paratracheal and retroperitoneal lymphadenopathy and bone scan revealed vertebral metastasis. Patient received oral cyclophosphamide and hematinic and vitamin support, along with radiation to spine. There was near complete clinical response, and progression free period of about 32 weeks. Thus, single agent cyclophosphamide in the present case provided near total clinical response and prolonged period of freedom from disease progression with excellent palliation of symptoms. Hence in patient of advanced and metastatic small bowel cancer, with poor performance status metronomic therapy with single agent cyclophosphamide may provide viable option both for treatment and palliation.
  2,976 93 -
ORIGINAL ARTICLES
Relationship of quality of life with disability grade in obsessive compulsive disorder and dysthymic disorder
NV Roopesh Gopal, CY Sudarshan, S Ganesh Kumar
September-December 2014, 20(3):212-214
DOI:10.4103/0973-1075.138397  PMID:25191009
Background: There is paucity of information on the relationship of quality of life (QOL) in obsessive compulsive disorder (OCD) and dysthymic disorder (DD) with disability grade in India. Aim: To assess the relation of QOL with disability level in OCD and DD. Materials and Methods: This hospital based study was conducted in a medical institution in Davanagere, Karnataka, India. Data was collected by using Diagnostic and Statistical Manual IV Text Revision (DSM IV TR) criteria, WHO QOL BREF and IDEAS. Relationship between disability grade and QOL was assessed by independent sample t test. Results: Mild disabled OCD patients had a significantly better QOL in the Q1 domain i.e. perception on quality of life as compared to moderately disabled patients ( P < 0.05), while in other domains of QOL, there was no statistically significant difference ( P > 0.05). But, QOL score in physical domain showed significant difference across disability grades (56.00, SD = 6.89; 48.50, SD = 12.28) in DD, but not in other domains. Conclusion: Perception of QOL is better in those with mild disability in OCD, but in DD, physical domain of QOL score is more in mild disability compared to moderate disability.
  2,904 97 -
Quality of life and its related factors among Iranian patients with metastatic gastrointestinal tract cancer: A cross-sectional study
Jabbar Heydari Fard, Ghasem Janbabaei
September-December 2014, 20(3):215-219
DOI:10.4103/0973-1075.138398  PMID:25191010
Context: Quality of life (QoL) is an important issue in all cancer patients; especially in patients with metastatic cancer. But there is very little information available about QoL in patients with metastatic gastrointestinal cancer. Aims: The aim of this study was to evaluate the quality of life and its associated factors among Iranian patients with metastatic gastrointestinal tract cancer. Materials and Methods: In this cross-sectional study, a total of 250 patients with metastatic gastrointestinal tract cancer were recruited from the one oncology center related to the Mazandaran University of Medical Sciences, Sari, between March 2012 and August 2013. Their QoL was evaluated using the EORTC QLQ-C30 questionnaire (Persian version). Results: In this study, the overall QoL score of patients with gastrointestinal tract cancer was 57.63, which was relatively optimal. There was a statistically significant relationship between symptoms scale and general health status domains of quality of life with age ( P < 0.05). Also, there was a significant association between patients' gender and their social functioning ( P = 0.017) and also their emotional functioning ( P = 0.015). Conclusions: The findings suggest that in patients with metastatic gastrointestinal cancers, the most affected functions in their QoL were social and emotional functioning which get worse with age. Thus, providing psychological counseling and psychotherapy services to deliver culturally appropriate mental health care and social support for these patients and their families' which can lead to the improvement of QoL in these patients is strongly recommended.
  2,801 140 -
Continuous low-dose oral chemotherapy in recurrent and persistent carcinoma of cervix following chemoradiation: A comparative study between prolonged oral cyclophosphamide and oral etoposide
Upasana Baruah, Debabrata Barmon, Munlima Hazarika, Pankaj Deka, Amal Chandra Kataki, Sushruta Shrivastava
September-December 2014, 20(3):208-211
DOI:10.4103/0973-1075.138396  PMID:25191008
Aim: To compare the efficacy and toxicities of low-dose oral cyclophosphamide and oral etoposide in patients with persistent and recurrent cervical cancer with gross pelvic disease following full course of chemoradiation therapy. Materials and Methods: 30 patients with recurrent and persistent cervical cancer with gross pelvic disease were enrolled in this trial. The patients were randomly divided into two groups of 15 patients each with one group receiving low dose oral cyclophosphamide (100 mg/day) and the other group receiving low-dose oral etoposide (50 mg/day). Results were statistically analysed by IBM SPSS Statistics 19. Results: Oral etoposide was not well tolerated with grade 2 neutropenia occurring in 33.3% and grade 3 neutropenia in 6.6% and thrombocytopenia occurring in 13.3%. Oral cyclophosphamide group on the other hand was better tolerated with none of the patients having thrombocytopenia and 6.6% patients having grade 2 neutropenia. There were two complete response (15.38%) and one partial response at the end of study (7.6%) in the cyclophosphamide group whereas there was no complete response and two partial response (16.6%) in the oral etoposide group. Conclusion: Long-term, low-dose oral etoposide was found to be less tolerated without any significant effect with patients with persistent and recurrent cervical cancer with gross pelvic disease following full course of chemoradiation therapy in contrast to oral cyclophosphamide which was found to be effective and well-tolerated by the patients.
  2,757 115 -
EDITORIAL
Palliative Care Research: Indian perspective
Sushma Bhatnagar
September-December 2014, 20(3):167-168
DOI:10.4103/0973-1075.138381  PMID:25191000
  2,438 228 1
EDITORIAL COMMENTARY
Is Quality of Life "The Heart of The Issue" In Head and Neck Cancers?
Sarbani Ghosh Laskar, Shirley Lewis
September-December 2014, 20(3):169-170
DOI:10.4103/0973-1075.138382  PMID:25191001
  2,467 185 -
ORIGINAL ARTICLES
Analysis of Sociodemographic parameters of patients admitted in a newly established palliative care center in a regional cancer institute of north-west India
Mukesh Kumar Singhal, Akhil Kapoor, Puneet Kumar Bagri, Daleep Singh, Raj Kumar Nirban, Narender Kumar, Harvindra Singh Kumar
September-December 2014, 20(3):220-223
DOI:10.4103/0973-1075.138399  PMID:25191011
Background: After 4 months of the establishment of palliative care center (PCC) in our institute, we present an audit of the sociodemographic parameters of admitted patients. Such an audit can help to recognize the lacuna in the management and thus help to identify the specific requirements of cancer patients that might be overlooked in a busy cancer center. Materials and Methods: A total of 234 patients were admitted in our PCC since its inception in October 2013. The study design was retrospective, collecting the data from the medical records of the patients. The descriptive statistics of all these data were calculated in terms of frequencies and percentage of categorical variables. Results: Out of 234 patients admitted in PCC, 156 (66%) were male. The median age of the patients was 54 years. A total of 44% patients had primary malignancy of head and neck, 14% of cervical, 17% of lung cancer, 6% of breast, and 5% of colon, respectively. Metastatic disease was present in 76% of the patients admitted in the PCC. Liver was the most common (46%) metastatic site. Total 13 symptoms were identified with mean number of symptoms per patient at admission in PCC being 5.17. Conclusions: Palliative care services are an indispensable part of a tertiary regional cancer care center. The oncologists should be made aware of the requirement of better relief of pain and other distressing symptoms to provide better quality of life to the patients suffering from advanced cancer.
  2,447 98 -
LETTERS TO EDITOR
Cancer rehabilitation evaluation system questionnaire: a disease-specific and treatment-specific measure of rehabilitation needs and self-reported quality of life
Senthil P Kumar, Mariella D'Souza, Vaishali Sisodia, K Vijaya Kumar
September-December 2014, 20(3):243-244
DOI:10.4103/0973-1075.138403  PMID:25191015
  2,143 113 -
Esthetic conformers: Improving the quality of life of enucleated children
Himanshi Aggarwal, Pradeep Kumar, Raghuwar D Singh, Varun Baslas, Rohan Grover
September-December 2014, 20(3):244-245
DOI:10.4103/0973-1075.138404  PMID:25191016
  1,826 80 -
Availability, current issues, and anticipation training for clinician-patient communication in palliative care: Learning and doing or learning by doing?
Senthil P Kumar, Manu Goyal, Vaishali Sisodia, Vijaya K Kumar
September-December 2014, 20(3):245-246
DOI:10.4103/0973-1075.138405  PMID:25191017
  1,755 100 -
Iranian nurses and do not resuscitate orders: knowledge, skills, and behaviors must be addressed
Kieran Walsh
September-December 2014, 20(3):246-247
DOI:10.4103/0973-1075.138406  PMID:25191018
  1,712 70 -
COMMENTARY
Commentary
Jayita Deodhar
September-December 2014, 20(3):187-188
DOI:10.4103/0973-1075.138387  
  1,639 82 -
Online since 1st October '05
Published by Wolters Kluwer - Medknow